I have about 4 post that I want to write. Hmm..where to start....
I'll start with this week and work my way back. It'll be like a crazy time- traveling blog. Where's Michael J. Fox when you need him? Hello? McFly?
This week I had the opportunity to participate in something exciting. Sarah L, Kaela's mom (and one of my favorite people) and I were asked to speak to a small group of grad students in genetic counseling at U of M Ann Arbor. We were there to offer our persepective as parents of little people (POLP). We were also joined by Stacie, LPA member and little person who relayed her experience as a LP and a POLP. LOL! That's a lot of acronyms I should remove ASAP! J/K! Whoa! Outta control!
This was a very theraputic experience for me. If you are familiar with our story, you know that Owen was given no chance to live after his birth. No alternative scenarios were offered, no hope was given, we were told point blank that Owen would die.
As time passes and Owen progresses into a healthy happy boy, the anger as to how we were handled builds. The more I think about the fact that I was offered no hope that Owen would live, the more I want gather my doctors in a room and really let them have it!
So when I was give the chance to speak to people who may potentially have the same impact on other couples - I jumped at the chance. Despite what you are probably thinking, no - I did not unleash my pent up anger on a poor group of genetic counseling grad students!
Sarah and I were able to tell our stories and offer our opinions on what to do and not to do. We both felt that it was important to be sympathetic & honest. We also wanted them to keep in mind that though patients will pass in and out of their office, this is our life. Don't numb yourself to our plight because you have seen it all. To me it's very important that they always allow for the possibility that anything can happen.
These students were very bright and eager to learn. I'm sure they will be the type of counselers that will make a positive impact. I very much appreciated being able to relay my story. It was touching that they were interested in having our perspective. It made me think (which I hate to do but I went with it)...do med school students ever get patient perspective before they are unleashed into the wild? If the answer is no then - why not? All doctors should be required to attend a class where patients are able to give their sides of the story. I've been lucky enough to generally have great doctors, but I know that there are plenty of horror stories out there. Hmmm...just a thought.
Ok - well I'll leave you with some Owen pictures for your viewing pleasure!
What's up? You wanna go?
George always has my back
George and Owen in a staring contest. Guess who wins?
I'm just messing around!
I love kitty!
Like son, like father
13 comments:
IDK WTF ur talking abt! LOL
Seriously, though, it's sad how often we hear the story of parents who were guaranteed that their child would not live past birth. Have you read Eric's blog about his son Evan who was born two months ago? Same situation, where they had prepared themselves for his passing, even had the end of life photographer there to document it for them, and then he just stubbornly sat there and didn't die. Turns out Evan has CHH, which is rare, but not necessarily life threatening, and now he's doing great! While being surprised by life is always a better thing than being surprised by death, I still really wish doctors would take it on themselves to be CERTAIN of things before telling parents that death was inevitable.
Oh - and the staring contest? My money's on Owen! ROTFL
What a fantastic opportunity! How amazing to know that hundreds of other families could be positively impacted just by you getting up and sharing your story to medical professionals. I have hope that prenatal misdiagnoses will someday not occur so frequently, and other families can be spared the feelings of hopelessness that many of us have felt.
Cat! I love you too :) I know you didn't use that many words when you mentioned me, but still :) ha. Loved doing this with you and I can't wait to do it with you and Stacie again next year!! What a great thing to be able to do like you said. And I agree, more docs, people that deal with people, etc, should have experiences like this before going out there and just doing their job. Loved seeing you and can't wait to see you again soon. Owen is adorable!! Love the pic of him and the kitty!! Did you shave his head? He looks so grown up! What is going on? Why do they grow up so fast?! Okay, off to post on my blog ...I got your message loud and clear :)
What an amazing opportunity Cat, I wish I could do something like that here (even though I'd probably pee my pants talking to that many people - lol). As for the student doctors gettting some lessons from the patients....I think you are on to something!
As a nurse in a different field, I see bad news delivered well and I see it done VERY badly and the impact upon peoples and their families life can be profound.
Heres to you and Sarah for having the courage and desire to try to change things!!!!
I am a complete text idiot and in need of texting 101 just to know what some of the acronyms stand for. What a great opportunity you and Sarah were given. Aidan's dx didn't come til after his birth (day 2) so I didn't have the misdiagnosis that I have heard happen among so many pregnant women. In a way I am glad I didn't know while I was pregnant. So happy you were able to share your experiences with the grad students and make it a valuable lesson they will take with them. Owen is as adorable as ever in his photos. He reminds me so much of Aidan.
How fortunate you were to be able to tell your side of the story to counselors! I am sure it will pay off with some more than others!
And such adorable pictures of Owen!!
Wow! That is such an awesome opportunity that you got to tell your story and educate them even further! Love the photos of your cutie pie!
Ok so I am totally with you on as time passes I want to gather up all those doctors and just scream. I mean they were so wrong-and I actually went as far as requesting the write up from the BIG BAD NYC perneonatalist and his diagnosis of Preston was either TD or Jeune's Syndrome. Excuse my language but what an asshole. Even I could have ruled that out. They said his arms and legs were less than 5th percentile. He was 19 1/2 inches at birth. ARGH! Where the hell were the calipers when they were measuring? Ok now I am getting steamed.
Anyway, on to Owen-seriously the cuteness has to stop. I am glad he like George. Preston has that george and a different one. That one scares the crap out of him-I think it's the eyes, but I think Preston needs to man up. Love the big smiling picture. My mom saw his pics and thinks he is a doll!
Ok so I am totally with you on as time passes I want to gather up all those doctors and just scream. I mean they were so wrong-and I actually went as far as requesting the write up from the BIG BAD NYC perneonatalist and his diagnosis of Preston was either TD or Jeune's Syndrome. Excuse my language but what an asshole. Even I could have ruled that out. They said his arms and legs were less than 5th percentile. He was 19 1/2 inches at birth. ARGH! Where the hell were the calipers when they were measuring? Ok now I am getting steamed.
Anyway, on to Owen-seriously the cuteness has to stop. I am glad he like George. Preston has that george and a different one. That one scares the crap out of him-I think it's the eyes, but I think Preston needs to man up. Love the big smiling picture. My mom saw his pics and thinks he is a doll!
I think what you are doing is awesome and so needed in the medical field. I work with a lot of pediatric doctors and they often lose a bit of humanity. Fortunately, my line of work has taught me to not put up with bad doctors when it comes to my own children. I am so glad you are channeling all of the frustrations from your earlier experience into something positive!
Did you read the article that Bill Bradford posted on POLP2 recently? It's related to this topic.
No matter how angry you are at those lame doctors, I bet you are grateful every single time you look at Owen that they were wrong.
He is just so adorable.
What a great opportunity - and how great that you didn't scream at them :) I feel so blessed that Trace didn't get diagnosed until he was a handful of months old - so many have been given the TD diagnosis incorrectly. Owen is just too much, he is getting soooo big and is cute, cute, cute!
Cat!
What a wonderful opportunity to talk to those grad students! I am sure you girls amazed them with your knowledge!
I could not have imagined being given a lethal diagnosis for Caden ~ instead we were told his arms and legs are measuring a little short from shoulder to elbow and hip to knee ... but this doesn't fall into anyone category so he will just be short?! (Isn't that a true marker for achondroplasia?) We see a geneticist when Caden is five months old ... nope, doc says he's fine! HELLO?! We don't get the diagnosis until he is 13 months old! I too have had my fair share of doctors!
As always, adorable Owen Pictures!!!
Trisha
What a wonderful opportunity!! Hopefully they take clues from you guys next time they break the news to a patient who has gone through what we have! I love the cat.Owen/Dan pic!! They look so alike! Too funny!!
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